MikeSimon-Transplant

Don't worry Mike I won't give anyone else "false" info on this forum or any other. By the way the longest living liver transplant is Aaron Cameron 21 yrs story is on www.aspx?storyid=89731 so taken that is the longest I would say 5-10 would be a fair average. In a perfect world where cirrosis (cirrhosis),HCV and liver cancer doesn't shorten the span....maybe. Thanks Y'all for your help and it was nice being around but just too much slammin and drama, Good Luck.

[can-do-man]

Sorry other way didn't work. So heres the regular link.

  http://www.lifespan.org/healthnews/2006/09/28/article535157.html

[mikesimon]

Gee, I'm so sorry that I corrected your misinformation. Perhaps I should be less worried about incorrect information than I should be about offending someone.
BTW:
"In sum, the longest known liver transplant survivor is living a normal life over 30 years after the operation. If all goes well, a liver transplant can last as long as the patient."
This is from:
http://hora.cpmc.columbia.edu/dept/liverMD/faqs_posttx.html

"The world's longest liver transplant survivor has now had her allograft for 36 years, and 34 other patients that I transplanted at the University of Colorado lived for at least 25 years."
From:Transplant Pioneer Awarded National Medal of Science: A Newsmaker Interview With Thomas E. Starzl, MD, PhD 2005 @http://www.medscape.com/viewarticle/519810

You also say:"so taken that is the longest I would say 5-10 would be a fair average."
While it may, in your opinion be fair, it is certainly not accurate.

Once again from:
http://www.nlm.nih.gov/medlineplus/news/fullstory_39300.html

"Average life expectancy for female liver transplant patients was 26 years, compared with 18 for males.

And finally: In conclusion, the authors wrote, "Overall, female [liver] recipients have a longer life expectancy and lose fewer life-years than male recipients. While younger recipients have a longer life expectancy, they also lose more life-years. Those transplanted for cancer, hepatitis C virus infection, and alcoholic liver disease had the greatest loss of life-years."

Seperating out life expectancy for HCV transplants from recipients for other underlying deseases is difficult enough to do without accounting for those who treat their HCV successfully vs those who don't. That is why offering information on something like this is difficult enough when you do the research but it's impossible when you just wing it.

Mike

[NYgirl]

Feets - it's just the kind of post that while it might be true (or not I have no idea) someone might not want to dwell on.  Since there are HUGE steps being taken with this disease these days, even though that is the number...if it was me I sure wouldn't pay attention to it.  Would you?

Please just take a little break, walk awy and then come back. MANY of us have had to do it at times.

EVERYONE in here cares about you - but we ARE a group of ill people who try and communicate on the internet and that makes it SO SO HARD.  I've had arguments with people in here who's advice I value more than anything just because I was having a bad day or something stupid.

Like family or good friends - the drama just comes and probably wont ever stop. Only rational postings can do that.

So please.....think it over.

[mycoldfeet]

If you read the post below, you will see that I said I was not a transplant recipient but there were others here that were and may have better data on longevity, but that transplants are unpredictable, and to ask his Dad what the real deal was because of the little info he provided. The question he asked was if interferon could cause rejection because his liver is failing 6 yrs post transplant and being treated. I just said I never heard of it, and many transplant recipients that didn't clear pretransplant are on treatment. As far as how long a new liver will last...unless you know someone that had one in 79 or 80 I would say the numbers are speculation, and no I can't say how long one will last any more than if tx will bring SVR, and one more thing ages 17-34 heck most of us didn't even know we had HCV until much later so of course stronger and younger patients will have a better outcome, but before I take those numbers as gospel I have to go by what I see not more studies saying what should happen, as they change everytime I turn around.

[mycoldfeet]

If you read the post below, you will see that I said I was not a transplant recipient but there were others here that were and may have better data on longevity, but that transplants are unpredictable, and to ask his Dad what the real deal was because of the little info he provided. The question he asked was if interferon could cause rejection because his liver is failing 6 yrs post transplant and being treated. I just said I never heard of it, and many transplant recipients that didn't clear pretransplant are on treatment. As far as how long a new liver will last...unless you know someone that had one in 79 or 80 I would say the numbers are speculation, and no I can't say how long one will last any more than if tx will bring SVR, and one more thing ages 17-34 heck most of us didn't even know we had HCV until much later so of course stronger and younger patients will have a better outcome, but before I take those numbers as gospel I have to go by what I see not more studies saying what should happen, as they change everytime I turn around.

[JazzCat]

With all due respect, you aren't qualified to speculate on what would constitute "a fair average" of life expectancy after a liver transplant.  

I agree with Mike.  Your comments do more harm than good.

[Sally01]

Sounds like you no longer intend to post.  I don't know what happened because I can not read every day but Mike Simon is one of the people that attacted me to this site about 3 months ago. Please don't stop your communication bc of some senseless drama.  I for one value what you say. I am also post transplant which there only seem to be a few so I am listening.  I tried to find the webb site in your above post unsucessfully.  Is the question mark part of the address?

[mikesimon]

To be quite honest I have noticed that my flow is much lighter since TX. Do you think the treatment is the reason or am I just getting old and dried up?

Seriously though, I am a transplant recipient and I know enough about life expectancy not to be misled by Mycold. But, what about those who are awaiting transplantation, or hoping to get a liver, or scared that might be their last option or just a friend of a transplant recipient or one waiting for a liver. If they believed Mycold's information then transplantation would be a pretty bleak option or prospect and it isn't that way at all - I hope. Should we not be sensitive to those potential readers and protect them from the needless anxiety of incorrect information? Anyone can make a mistake and I wouldn't come down on someone for that but to just guess at important information when it is quite easy to find troubles me. And yet I am perceived as insensitive presumably because I wasn't as diplomatic as some would like me to be. That seem a trifle hypocritical to my way of thinking but I am basically just an insensitive guy. But honestly, I'm really only trying to help anyone I can.
But thanks for bringing a little levity to a rather tedious thread.

Mike

[mikesimon]

The point I was making is that you didn't know what you were talking about so why did you even try to answer the question. If you really wanted to help you could have googled "life expectancy liver transplant" and had something accurate to say. Apparently it wasn't worth the time and trouble and so you speculated as what you thought might be true. And God forbid anyone call you on it. I haven't responded to any threads about menstrual cycles and TX because I don't know anything about that subject. Perhaps I should start waxing eloquently about cycles and treatment and be everyone's pal. And no one should be offended that I am wrong about it because we all just want to get along. No thanks. Mike

[GoofyDad]

Mike, I thought you wrecked your menstrual cycle after completing tx. Guess I'm confused.

With new liver or without - life is short. Let's enjoy what we got....

[mycoldfeet]

Just want to say before I sign off, did you even read the thread? His DAD is in liver failure, in the hospital 6 yrs post transplant and wanted to know if interferon was the culprit for the failure. I expressed surprise that he was in tx that many years later. The fact he knows his Dad is in liver failure might have clued him in that he doesn't have much time, never mind the 20 yrs the studies say he has. Guess he did't get the memo or extended warrenty. Nothing I said was stated as fact except the unpredictability of transplants, and that others here might have better stats than I, and to talk to his Dad, and if my "facts" are wrong according to some new studies post 1992 they don't make a hill of beans to someone in liver failure. But thanks for your unbiased opinion on my handle, for the rest of you thanks for your support and some laughs. Good Luck to you all.

[Kalio1]

I think when people come here with questions like this, all any of us can do is advise them to speak to the doctor and try to comfort them and offer support. No one, not even the doctor with all the stats of the patient in front of them can say for sure how long a person has on this earth. People defy odds every day.

Obviously this is a touchy subject, I think the most honest answer to "how long does he have" is always: no one knows.

If someone is dealing with a family member who is this dramatically ill, encouraging them to speak to the doctor and also speak to someone working with Hospice or an Ombusman from the hospital might be helpful.

[JazzCat]

Mycoldfeet....NYGirl makes an excellent point.  Even if your "facts" were accurate, it's quite insensitive to bring them up.  Who wants to be told that they only have 5 years to live?  You should change your moniker to "Mycoldheart"

[can-do-man]

http://preview.tinyurl.com/wxu82

The study of over 2,700 patients who received a liver transplant between 1985 and 2003 found that female patients live an average of 4.5 years longer than their male counterparts.

According to researchers at Queen Elizabeth Hospital, Birmingham, average survival time for the patients in the study was 22 years, compared with 29 years for a comparison group of healthy people of similar age.

Average life expectancy for female liver transplant patients was 26 years, compared with 18 for males. The average life expectancy for the general population was 31 years for women and 27 years for men.

Liver transplant patients ages 17 to 34 had an average life expectancy of 28 years. While this was the highest among the transplant patients, it fell far short of the average life expectancy of 51 years for people ages 17 to 34 in the general population.

[Better-Angels]

I have to agree with Mike, and it's specifically because he is so careful when relaying information that I have come to respect his opinion so much.

There are others on this board I feel the same way about, Cuteous, Scott, Chev, Bob (all of them), Willing, Galen, Kalio, Jim, and many more. I don't always agree with them, but I know they post with good intentions and almost always with supporting facts. I'm not an idiot and I do my research, but the value they bring to this board, and to those of us desprately searching for information is beyond anything I could have hoped for when I first started visiting this board 4 years ago.  

To Mike's point, I agree that posting misinfomation about something so terrifying should have been left to those that know more, and I don't think he was offensive in the least.

People here have pointed out my errors and I am always quick to restate my thoughts, clarify or change my mind. I don't get mad because someone points it out. I'm grateful that someone corrected me so the person I was trying to help is not mislead.

Don't take it so personal. It's really nothing to get worked up about. Have a better day and come back, that's the great thing about this board in particular, if we want to start over, we can and, everyone let's us.

Regards,
Debbe

[mikesimon]

Thanks so much for saying that. It means a lot to me. Mike